MS Guilt: Readers' Stories

If it is not our fault, why do we keep apologizing?

A couple of years ago, I wrote an article called Do You Have "MS Guilt?" I wrote this article in an attempt to identify some of the feelings that I had around my multiple sclerosis (MS) that I had not seen mentioned anywhere else. I was surprised at the response that I got to this article - it turned out that many people with MS identified with feeling "guilty" about the effects that this disease has on the family and loved ones.

 

Here are some of the comments that I received:

  • I have three kids, with the oldest being 5. My life revolves around guilt, not being able to take them outside, to school, to wake up during the night with them. My husband is like a single parent lately.
  • After eleven years with this wacky disease, I’m still learning to live with it. I find I say “I’m sorry” the most when my MS pain or spasticity get bad and I want to scream and my husband or (heaven forbid) friends or family are around and they realize I am having a bad time. I’m usually the gal with the smile and a laugh, but sometimes the MS sabotages that and I want to scream and make painful faces. So I apologize, I guess for not being everybody’s bright spot. I know it’s silly, but sometimes I just can’t help myself.
  • The comments about saying "I’m sorry" really struck home with me. My family keeps telling me I don’t need to be sorry for things I can’t change. Thank you everyone for being so open about the many issues that impact the lives of those of us living with MS.
  • I too live with guilt everyday of my MS life. I have to go see a therapist on a weekly basis just to try and stay on top of it, along with the depression and that’s after being diagnosed 3 years ago! I put on a good game face to all my family and friends who say I am taking it all so well and that I "look so good.” The loneliness and guilt though are the toughest things to deal with and I’m even married. But life seems to pass you by as everyone goes to work, walks, shops, and does all the ‘normal’ things that I used to do. 
  • I am so tired of explaining that, ‘No, your being exhausted is not like MS fatigue." I have felt so guilty about ms pain and fatigue that I have just stopped even trying to explain how I feel, even to the people who matter to me. It’s not bad enough to have MS we have to be made to feel ashamed of our symptoms and learn to just keep our mouths shut rather then explain yet another time.
  • I feel “guilty” when I can’t attend a family function because I don’t feel well enough. Or I am just too tired. I also find myself apologizing all the time because of the cognitive impairment, for instance asking people to slow down when dictating a phone number or trying to explain something to me. I’m sorry as I stammer and stutter because my speech is affected. I’m sorry because I can’t count money at the store (I rarely use cash). I’m sorry because I can’t find the word I am looking for and it takes me forever to explain what I need at times. I am so tired of apologizing and explaining myself. Sometimes I feel like people are looking at me like I am stupid. It’s demeaning and embarrassing. So then comes the “I’m SORRY!”
  • I have a really hard time with the MS guilt. I’m apologizing all the time to my family for burdening them with the task of helping take care of me, helping me carry thing or unloading the dishwasher for me. I am very much a people person, a very fun oriented peron, and am a peacemaker. I don’t stay mad at other people very long because I end up feeling bad about it. It is hard to go from a very energetic, people person to a tired person with disabling ms. I found that even though I don’t like staying mad at someone else, I tend to turn that anger onto myself. I will hold a grudge against myself for sometimes years. I recently have started to get over feelings of embarrassment and resentment for things that happened maybe 8 years ago. These feelings will build for years and I end up feeling not important enough. I apologize for this, too.

Bottom Line: On top of all the direct effect of MS and MS symptoms on our bodies and lives, MS also impacts those around us as we slow down, forget things or need help. What we perceive as a problem or inconvenience in the lives of our loved ones makes us feel like we are responsible, when it is really the fault of the MS. While I would love to tell you that I no longer apologize for MS-related problems, I can't - I still do it all the time. I would say that the most important thing is to be aware of where the blame really lies (with the MS and not with us) and talk about it openly with those close to us when possible.

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